Coexisting realities

The deep brain stimulator surgically implanted in 2014 has served me well, but its effectiveness wanes each day. A persistent brain fog hounds me, often leaving imagination as my only reliable companion in adventures of memory.

Today, I traveled back four years to share the water—from the safety of an underwater cage—with Great White sharks. Rounding off each day of diving, an informal tutorial on the behavior of this apex predator would be held in the vessel’s common area.

When two Great Whites meet while hunting, the pair will swim alongside each other to determine which shark is longer, with the “winning” fish continuing to predate in the disputed waters. The smaller shark moves to other hunting grounds, bowing peacefully out of the contest.

But occasionally, the two fish skirmish for reasons unknown to me, leaving many Great Whites scarred from the violent encounters. These physical anomalies serve as the primary basis for identifying the approximately 400 Great Whites living seasonally in the waters off Guadalupe Island, Mexico.

While peaceful collaboration appears to be their initial conflict resolution strategy, bite scars lasting the animal’s lifetime leave the impression that violence is the sharks’ reaction of choice. It can seem that there are two valid, coexisting realities, and perhaps there are.

Allowing nature’s clarity to relax the mind enlivens the spirit. Breathe deeply while strolling in winding woods or swimming circles on a quiet ocean. Animate the soul with the possibility of eternal truth, intertwined in the mutuality of authentic witness, permitting the unseen to appear.

Fortuitous circumstance–a PD update

Before my deep brain stimulation (DBS) surgery in 2014, despite significantly increased Parkinson’s symptoms, I was overall happy and at peace with life. I also had a deep-seated conviction that DBS would change everything, including my sense of spiritual well-being. Physical happiness trumped spiritual well-being, at least at this early stage, however. It was reassuring to know that DBS offered a relatively good chance of substantially improving my daily life, if only temporarily,

Now, seven years later, it is clear that Parkinson’s has overcome much of the positive influence of DBS, and monthly—if not weekly—disease progression is becoming more evident. The network of DBS brain wires still helps reduce some symptoms, and those symptoms that have returned are not identical to those experienced pre-DBS. Notably, DBS is still effective in mitigating the worst of my painful right-side dystonia.

On the other side of the ledger, my speech is arguably worse than before brain surgery. Unintelligible slurring is becoming more common by mid-morning, a challenging symptom to predict. I had forgotten the mini nightmare of a sound mind trapped in a body that could only produce the appearance of severe degradation. The required increase in my daily intake of Levodopa, which acts as artificial dopamine for a Parkinson’s patient, allows me to move but also causes the wild flailing and uncontrollable, painful writhing of dyskinesia.

Mornings are now the only reliable time for me to drive safely. My activities are limited by early afternoon to reading or watching movies for the most part, usually while fighting to break out of frustrating brain fog. By mid-afternoon, disease-induced fatigue, exacerbated by the morning battles and medication side effects, is overwhelming.

It is here when I am at my physically weakest and unable to think clearly, when anxiety’s gnawing horror rears up in psychological surprise attacks, that my situation borders on the untenable. It is disconcerting not being able to access the comfort of a deep breath. Having accepted the disease’s eventual outcome without reservation, it is the road getting there that can appear impossibly daunting.

Inevitably, when this happens—which is at least once most days—I remind myself to walk outside, to stare at a flower or spider web or the cloud-filled sky, in frightened silence until I can replenish that foundational part of me, the essence of my being, my soul. 

A foolishly giddy smile invariably crosses my lips when this happens as I revel in the cosmic joke, an improbable artifact of life’s guileless beauty. Unadorned by the brutal conveyances that surround, I reach a moment of surrender, laugh as my chest finally fills with breath, and marvel at life’s great circle of fortuitous circumstance, grateful for the day.

Round two (or was that 200?)

Life sometimes travels in circles, compelling us to confront similar challenges over and over. Maybe the core problem with breaking free from these recurring themes is that the goal—whether consciously or unconsciously considered—has not been met; perhaps the necessary life lesson has not yet been experienced.

Parkinson’s progression serves as a good example. Even before successful Deep Brain Stimulation (DBS) surgery, I knew that my increased capabilities would be temporary, waiting for who knows what to ignite the progressive nature of my disease once again.

It has begun. Parkinson’s has shrugged off the positive impact of DBS and is back to dragging me in a familiar direction, back to that feeling of an immobile, isolated helplessness. So, where is my power?

The medical bag of tricks is empty, with more medication the only option is to salvage a few scattered hours of reasonably stable mind and body from the day, for now. Old lessons are relearned, tactics are refurbished for nuanced differences. I prepare myself for the inevitable.

And here lies my power: the acceptance of what is to come in all its twisted beauty. I am not my body or my mind. Ultimately, I am all that I need. At the core of my being, smiling at life in all its colors of deceit, I am. Come and get me.

Losing my mind

As we grow older, it becomes apparent that losing one’s mind becomes both the greatest fear and the only goal worth pursuing. No associated numbers dwell in this no-man’s land of life’s journey: no specific age, degree of education, no amount of effort or time. The realization comes differently to all of us, and for some—I imagine—it comes not at all.

Consciousness, the human concept of the mind, of thinking in some fashion, metastasizes with life experience into a misshapen lump of contradiction. What we pursue does not bring happiness, and neither does what we accept, at least not on a conscious level. But what if happiness is merely the bait, the draw toward a manner of thinking that we are unable to comprehend intellectually, that rebels against the fiber of who and what our society has taught us to value?

The release of physiologic drugs, such as Dopamine—which is near and dear to my heart because of Parkinson’s—signal the positive reinforcement that keeps a desperate humanity looking in all the wrong places, or so it appears. But maybe the direction of the search is unimportant. There is no permanence in anything, especially in happiness. Might it be the process of challenge and reflection that yields reward, that eventually heralds in an elusive contentment, only discovered through an abrogation of a lifetime of facts and figures, of “losing one’s mind”?

Happiness encourages the weary explorer forward while being mistaken by the mind for the desired end state. Embrace your personal challenge. Hug it so tight as to make you brave enough to lose your mind in the process. Maybe all that is required of life is to continue on the journey.

Boldly going nowhere

Although there is a litany of possible Parkinson’s disease symptoms, ranging from dystonia to insomnia to depression and muscular rigidity, in my experience there is one insidiously consistent effect of the malady: a lingering apathetic malaise. This ennui, characterized by a near universal lack of motivation to do anything, has stuck with me on good days and bad, both before and after DBS surgery, and in times of general happiness and those of deep depression.

Parkinson’s makes virtually everything harder, which certainly doesn’t help. Most of the physical activities that used to be fun either no longer resonate or are outside a comfortable range of movement, at least for any length of time. When it takes tremendous effort just to make it out the door and into the car, this can lead to a self imposed isolation and loneliness. Because it hurts wrists, shoulders, and neck just to hold a book for very long or to work at the computer, one is left with a lot of time pacing the house and reflecting on life.

I’ve come to honor this time as best I can, understanding that there is a life of events, thoughts, and feelings to ponder, not with a dull memory’s illusory command of regret or self-satisfied victory, but with mind’s eye squinting in search of a sliver of insight. In frequent times of extreme boredom, I hold out hope for the permanency of an ever elusive peace, as if merely wishing for an ordered state of affairs from a disordered mind and soul might bring it closer.

Still, I jumble ahead to the circular reflection of a lonely man’s stroll into oblivion, boldly going nowhere.

“Motion’s coming on”

Professional aviation uses high-tech flight simulators to train pilots. From the outside, these boxy contraptions hardly look flight-worthy, mounted on multiple steel hydraulic powered pedestals that move the simulator to mimic flight conditions down to the smallest sensation. Inside, the boxy look is soon forgotten as the flight crew straps in to the perfect replica of an aircraft, including a near 360-degree visual screen.

Signaling the imminent start of a training session, the words, “Motion’s coming on” warns the aircrew as a matter of safety, as the hydraulics are engaged and pilots brace in case a system turn-on hiccup causes an uncommanded violent jerk.

At first, the simulator motion makes it feel like you are sitting on the head of a pin, with the slightest shift in aircraft controls causing an exaggerated effect. But that goes away quickly, and in no time the pilot can almost forget that his total concentration is on a false situation. It’s not uncommon to have a pilot finish a particularly difficult simulator shaking from the very real stress of the fake scenario.

In a way, most lives are spent teeing up on a personal life simulator, precariously balanced on a perch of falsehoods, experiencing all the stress and fear of life without actually living, or the benefit of a warning phrase like, “motion’s coming on.”

It might take the epiphany of tragedy to see past the facade of convention. The sensation is not comfortable, the realization that the Emperor has no clothes, that the underpinnings of entire lives have been held up by false gods of materialism.

Living a simulated existence can be comfortable for a while, but we all must eventually face the simple reality of death. This is just a humble reminder that life’s “motion is on.”

The most unlikely of places.

Personal identity is commonly viewed as an externally driven phenomenon that offers no individual recourse, a conglomeration of inputs from the superficial to the soulful that describe a person’s essence. Occupation-based assessments are a good example. The first topic of most conversations between the newly acquainted is what one does for a living. The answer, tellingly, is usually framed as, “I am a blank.” Can these four words come anywhere close to defining any human being?

Of course not, yet we not only allow such self identification, we inadvertently encourage such simplistic descriptions of the indescribable. The greater danger is that this can lead to actually believing we are bound by the limits of a job, societal role, or illness for that matter.

Small talk is, in my opinion, a celebration of the superficial; a denigration of personal meaning and power. We are creatures of habit. How we act gradually defines who we are to the only person that matters: ourselves. We start to believe in single words, such as generous or miserly. And that leaves little power in the hands of the individual when a negative personality trait becomes unbalanced, turning an opportunity for insightful change into never ending self chastisement and helplessness.

Tomorrow is another day, but why wait? Identity is our living masterpiece. Fill the canvas with your personal colors, creating the beauty that resides in the contrasts of your travels, often in the most unlikely of places.

Part Four: Chasing the ball of life.

Humans are creatures of the earth, flesh and blood animals that possess an innate, youthful urge to move, to dart wildly in a celebratory merge of body, mind, and soul. Just like a healthy dog, we need exercise, not only to mechanically grease the inner workings of our physical entity but to also rest the mind and feed the imaginative seedlings of the soul.

Parkinson’s makes all activity hard, just a slip away from disaster on a tightrope walk above depression’s muddy swamp. In “The Lost Intruder,” I discovered that facing physical challenges—both simple and complex—would leave me with a mental high, sometimes lasting for days. I’ve learned since DBS surgery that an intense workout is at times the only tool remaining between me and despair.

During my two-year psychological recovery from DBS—I hesitate to write with such finality, as the process continues—I successfully isolated myself from most people. Probably done from a subconscious understanding, and overcompensation, that what I needed most was the solitude of reflection, the ensuing seclusion has proven incredibly difficult to overcome. I still can’t tolerate small talk and am quick to stop a budding relationship in its tracks if I sense underlying superficiality.

It makes for many lonely hours. Maybe, for the first time in my life, I am feeling the actual, utter emptiness that surrounds once dispelled of most life distractions, like alcohol and the constant background chatter of TV or radio. It’s not just being around people, it’s regularly connecting with them on a deeper plane in a manner that is fresh and new. A tall order, indeed. Slowly, it seems that I am resurrecting my old cadre of friends, but on a more complex level, and in rare circumstances making new, meaningful friendships.

It can be a tortuously slow road, but I do see progress in my journey. I suspect there are others afflicted with Parkinson’s, and other chronic diseases, who tread a similar path but are not engaging in regular physical activity. My advice: try exercising. Do anything; just move. Chasing the ball of life can be hard work, but it can still be fun if you put a spring in your paws, a smile on your snout, and you share with a friend.

#livingwithparkinsons #thelostintruder #peterhuntbooks #dbssurgery

Part Three: Parkinson’s helped resuscitate my soul.

“The Lost Intruder, the Search for a Missing Navy Jet” is largely about shedding old identities, which allowed me to create fresh characteristics and behaviors based on who I wanted to be. Wiping my identity slate clean was daunting. But merely existing without the foundation of an internalized self-portrait, as I did for some time after Parkinson’s Deep Brain Stimulation surgery, was profoundly disturbing, especially while trying to avoid being defined by the outside world.

Working through the emptiness, I experienced honest, unfiltered emotions for the first time in decades. Not since childhood had I felt such stinging gut reactions, real-time feedback that inspired serious reflection on what was important in life.

The solitary time spent on the water combing the ocean bottom encouraged introspection, and with my mind temporarily free of a lifetime of knowledge, logic, and reason, a pair of feelings filled the void: kindness and love. It became evident to me that nothing else mattered, that all man’s rantings and ravings served as distractions from our true nature. I didn’t choose a new identity; it chose me.

Science and technology, man’s tools of understanding, can answer complicated, practical questions, but only human insight—a soulful exploration of the essence of things—can shed light on why we exist and suggest how we might act to realize happiness. To disregard one as trivial is to risk losing the whole point of life.

I have no answers. I do, however, acknowledge my feelings as the most essential part of me, and kindness and love make me feel good. And after all, isn’t that what we are ultimately striving for as we embark on mindless quests for power, money, and fame? To simply feel good about ourselves?

#peterhuntbooks #thelostintruder #livingwithparkinson’s #dbssurgery

Part Two: When even coffee turns—Parkinson’s sneaky demons.

The reconstitution of Parkinson’s Disease (PD) symptoms after Deep Brain Stimulation (DBS) surgery is slow, but the path well-worn from previous travel. My single prescription medication, Rytary, is a Levodopa-based drug like the Sinemet that had grown clumsy in 2014 due to the large doses required. Levodopa is essentially artificial Dopamine, the neurotransmitter that goes missing in a Parkinson’s patient.

I carefully time my dose of Rytari at five intervals daily. The goal is to keep the body functioning in the Levodopa “sweet spot,” bracketed between the fluid, writhing of dyskinesia associated with too much Levodopa, and dystonia’s angry spasms and foot-dragging shuffle. Levodopa loses efficacy over time, however, requiring ever higher doses, narrowing the space of calm until it is eventually gone. DBS temporarily widens the sweet spot, but for how long is anybody’s guess.

Fatigue, caused by the triumvirate of insomnia, the disease itself, and Rytari, factors into every aspect of daily life, and any lengthy task risks ambush by a debilitating sleep attack. Coffee unpredictably either energizes my body (normal reaction) or heightens the sleep attack’s intensity (opposite of normal). Still, I tempt fate’s caffeinated roulette wheel daily; screw it, I like coffee.

After 13 years of living with PD, other symptoms recede into the shifting background clutter of routine: a propensity to choke when eating or drinking, rigid, slow movements, loss of dexterity, joint pain, and others. There is a great deal of time for reflection, meditation, and hanging out with the dogs, but the loss of energy leads to apathy, which can result in exhausted boredom.

No alcohol, healthy eating, lots of exercise, and contact with nature provide the raw materials to cope with recurrent depression. Careful contemplation helps define the underlying reason for despair’s crude urges, allowing them to be at least partially released. I choose to avoid the pitfall of obsessing for a “cure,” to either depression or Parkinson’s, and instead live to learn from them.

There are natural pains in life that are meant to be with us, unmasked by alcohol or other drugs. Melancholy, that delightful sadness of marveling at life’s unfiltered authenticity, is perhaps one of them. The contrast heightens my overall happiness and sense of well-being: the payback is worth it.

#peterhuntbooks #thelostintruder #livingwithparkinson’sdisease #dbs #parkinson’sanddepression